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by NHMike
Mon Dec 11, 2017 6:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Stage IVa just do Xelolda or 5-fu?
Replies: 82
Views: 4084

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of ...
by NHMike
Mon Dec 11, 2017 3:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling nervous n very high anxiety
Replies: 37
Views: 900

Re: Feeling nervous n very high anxiety

My hands are cold right now and I'm not on chemo. It's the cold weather in the Northeast and my cold office. We're supposed to get down to low single-digits later this week so going on Oxaliplatin should be interesting. I do have cold weather gear but it might not be enough. I'm glad that you can go...
by NHMike
Mon Dec 11, 2017 11:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 461
Views: 33609

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I changed the Convex bag this morning (20 minutes) to the last bag from the Hospital and I was amazed at how clean everything was from the Convex bag. So using the stoma powder, Cavilon Spray and changing in four days. The skin looks and feels great. I went back to my Wipes for the one today as I'm ...
by NHMike
Mon Dec 11, 2017 11:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm NED!
Replies: 21
Views: 550

Re: I'm NED!

Hopefully a permanent end to what looks like a long year. Must be a huge relief.
by NHMike
Sun Dec 10, 2017 5:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New on the forum
Replies: 48
Views: 1810

Re: New on the forum

Does this mean that you have a temporary colostomy and will get an ileostomy later on? I think so, they did it because I had a blockage, but the tumor is still in the rectum, because they want it to shrink after radiation for 7 more weeks. When they remove the tumor they will make a new stomy so th...
by NHMike
Sun Dec 10, 2017 5:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New on the forum
Replies: 48
Views: 1810

Re: New on the forum

Thank you NHMike for your reply! Tomorrow I will try to fish more information from the doctors, they tell me so little about my status and future, I understood from the net that now I have a colostomy and later I will have a ileostomy, but they somehow don’t want to use the scientific terms and exp...
by NHMike
Sun Dec 10, 2017 4:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80659

Re: TIL Immunotherapy at NCI

How do you determine that you have HLA-C*0802 or HLA-A*1101? Is there a blood test for this? Or do they get it from a tumor sample? Prior to my first in-person screening, NIH sent an HLA Test Kit via Fed Ex. I took it to my local hospital, and a nurse followed the instructions to draw blood, and th...
by NHMike
Sun Dec 10, 2017 1:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New on the forum
Replies: 48
Views: 1810

Re: New on the forum

After open surgery, when did you start to drive, walk the dog, hike on terrain? Did you use a belt? I had open surgery with a five inch scar and four other holes. The first time I drove after surgery was 9 days later. I drove three times for about five miles and had no problems. We don't have a dog...
by NHMike
Sun Dec 10, 2017 12:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 461
Views: 33609

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

We had three inches of heavy, wet snow and I did some pushing of it down the driveway. My son cleaned it up (carried it off). He helped me clear the lower roof as well. I used a roof rake with five sections to clear off a second story roof. It uses a lot of upper back, shoulder and chest muscles. We...
by NHMike
Sun Dec 10, 2017 12:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 461
Views: 33609

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

“Blow outs” (I.e. failure of a wafer with dramatic leaking of liquid ileostomy fecal output) will invariably happen from time to time. Sometimes “blow outs” just happen, a perfect storm of incidental events that contribute to a wafer (and barrier ring) losing contact with the skin. A wafer that is ...
by NHMike
Sat Dec 09, 2017 11:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80659

Re: TIL Immunotherapy at NCI

How do you determine that you have HLA-C*0802 or HLA-A*1101? Is there a blood test for this? Or do they get it from a tumor sample?
by NHMike
Sat Dec 09, 2017 11:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80659

Re: Rejected

I uploaded all the CT scans and sent over the medical records. But after doctor took a look at my CT images, they think I have all my lesions in my liver, not anywhere else, they do not want to resect a sample from the liver, as it is too risky. Ideally I should have some lesions in the lung or lym...
by NHMike
Sat Dec 09, 2017 7:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CT Scan Just came in Liver Met (one)
Replies: 23
Views: 718

Re: CT Scan Just came in Liver Met (one)

Anyone do the 2day on 12 day off regimen of folfox/oxalaplatin with pump for 3 months, 6 treatments? Is the chemo tough when given like this? Also installation of the port, is that scary? I've run into a lot of people doing FOLFOX for 6-12 treatments. Chemo seems to affect people differently. Most ...
by NHMike
Sat Dec 09, 2017 6:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 461
Views: 33609

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I use the 11 o'clock tab to burp the pouch. This can be dangerous if it's not just air puffing up. It's also useful to remove the pouch if you are using closed end systems and need to change the whole pouch for clean one. Okay, now I know what it means to burp the pouch. I had wondered about the te...
by NHMike
Sat Dec 09, 2017 3:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 461
Views: 33609

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I had a close look at the Convatec flange. Facing the front of the flange, there are the belt tabs at 3:00 and 9:00 which, of course, I use with my belt. But I also noticed a tab at 11:00 and wondered what that was for. Could it be for a shoulder strap? I did some digging and found a patent descript...

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